Thursday, October 27, 2011

KayTar is having a pretty good week. Monday and Wednesday she got through the entire school day without having to visit the nurse (except for her daily visit for meds and pump hook-up), and Tuesday there were some small bumps, but she made it through. She's flirting with a little respiratory infection, but doing well in spite of it.

In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!

I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!

Monday, October 24, 2011

Since starting KayTar on Augmentin, she hasn't had any abdominal pain! Her current GI med/feed schedule looks like this:

5am: Nexium

6am: Augmentin + 6 ounce Pediasure (over 45 minutes)

11am: Augmentin + 8 ounce Pediasure (over 1 hour)

3:30pm: Augmentin + 8 ounce Pediasure (over 1 hour)

7pm: Nexium

8pm: Augmenin + 6 ounce Pediasure (over 45 minutes)

Actually, last night Josh forgot to adjust the dose on the pump, so she got 8 ounces at bedtime and it went well! We're keeping at the 6, 8, 8, 6 schedule for a couple more days and then we'll move up to all 8s and see how it goes. She is also eating pretty well (for KayTar), even her beloved meats are not causing pain. Thus far, I would say the Augmentin is a success and I hope that it continues to be helpful to her!

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On the respiratory front, KayTar might be having her sleep study done this week IF the pulmonologist's office can actually get the orders sent out. One of the most frustrating aspects of having a medically-complex kid (aside from the way the new Zevex bags stick to the bottom of the spout and make me spill formula once a week, at least) is all the calls to physician's offices and schedulers to make sure orders get sent, received, and to the people they are supposed to get to so tests can be scheduled (or to make sure referrals are made or that lab results are received or that the medical supply company sends/receives updates prescription forms on time and so on ad nauseum). If you don't have experience with this little game, you would be SHOCKED to know how many times the ball gets dropped during the process. It seems very straight-forward; doctor writes an order, staff member faxes an order, scheduler receives an order, calls parent/patient to schedule. But it usually goes more like this, doctor writes order, forgets to sign order, parent calls office to check on order after a week, doctor supposedly signs order, order is supposedly faxed to scheduler, parent calls scheduler (another week later) who has not received the order, parent calls clinic to check on order, staff tells parent that order was faxed already, parent asks if they would mind refaxing it, parent calls scheduler to notify her that orders are coming, asks for a call back....and waits. Repeat calls daily until orders are received by scheduler. So, that is where we are now, but the scheduler told me that they have an open slot on Wednesday, so if the office gets the orders to the scheduler soon, KayTar will likely be having her study done this week. Fingers crossed!

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In other news, BubTar finally decided on his costume: Dr. Who (the 10th) Isn't he cute?!

Thursday, October 20, 2011

We started KayTar on Augmentin for motility on Tuesday and since then, she hasn't complained of abdominal pain and she is back on 6 ounce bolus feeds. Yay! We are going to stay at 6 ounces for now and try to add in some meat (her favorite thing!) and see if she stays pain-free before trying to increase to 8 ounces.

Bad:

Yesterday, KayTar was complaining of being "spinny" at school. It was a persistent complaint and she didn't look quite right to the nurse at times, so she called me and I came up to observe her for a bit. She seemed okay for the most part, but once while we were talking she kind of crumpled in my lap and she grabbed her head and said, "Oh, it is worse!" Since spinny is a buzz-word for episodes, I erred on the side of caution, brought her home, medicated her, and tucked her in. She slept for a while and woke up feeling better.

This morning as I was leaving the kids' school, she was in the clinic again, complaining of being spinny. She tried to talk me into taking her home, but she seemed okay. I don't want to react prematurely and teach her that saying she is spinny will get her a ticket home. So I told her to put her head down at her desk if she feels spinny, or sit down if she is standing, and then check in with the nurse when it is her regular time to see her. Even though she seemed okay, I'm a little nervous about how the day will go. I'm about to head out to my history class...exam day...so hopefully everything will be smooth and we will both get through our respective school days.

Monday, October 17, 2011

KayTar picked her Halloween costume yesterday, a skeleton. She was wearing it around the house yesterday, trying out different skeleton jokes so she would have some good lines for Halloween. At one point, we were shooing her out of the room to go play and she said, "Or I could go BONE myself! Get it?! BONE MYSELF?!" then she started laughing and pointing at her costume.

We almost DIED! We certainly got it, but she sure didn't!

We told her not to use that one for Halloween...I can just imagine her telling someone, "Give me some candy...or I'll BONE you!" Oh Lord...that kid is a hoot.

PS: She doesn't have a UTI (the culture was clean). She is still having near daily abdominal pain and she is down to 4 ounce feeds. I don't know what is going on, but we're going to try the motility meds starting tomorrow. I don't know what else to do for her.

Friday, October 14, 2011

I could tell you about how KayTar's tummy still isn't doing well, or about how she has had abdominal pains several days in a row, or about how she vomited last night and again this morning and is home with me now so we can try to get her to tolerate clears and then maybe some formula, or about how I snuck into her room last night to pray over her because I'm not just worried about the tummy woes but about what all this might indicate for the future, or about how BubTar asked me this morning if there are other kids who have problems like KayTar and why the doctors can't figure out how to help her better...but instead, I'm just going to post some cute photos. I think that would be more fun for everyone involved. ;)

Afternoon update: KayTar's morning urine was cloudy, so we ran to Walgreen's for some test strips. I tested her urine and it was VERY positive for leukocytes. We went to see the pediatrician and verified that she has a UTI...her very first (that we know of). If I hadn't seen her morning urine (if she had flushed like she should have, LOL), I never would have guessed. She didn't have any typical symptoms, but I hope that once this is cleared up, maybe some of her recent issues will resolve, too. Fingers crossed! I'm actually a little relieved to discover she has *just* an infection! Here's to another round of Suprax.

Monday, October 10, 2011

KayTar has been having some GI issues again. For a couple of weeks now, she's been going several days between bowel movements (which means her constipation is getting out of control) and we've toyed with her Miralax dose, but haven't been able to work things out easily. She has been waffling between liquidy stool and nothing...so this weekend we upped the Miralax and stayed close to the bathroom! KayTar enjoyed some movies and relaxation time in my bed and we got things moving. I think she is all cleaned out now, the tricky part will be finding a dose that keeps things moving from here on out. She actually had fewer accidents this weekend than she normally does, because things were running like clockwork. I'd send her to the toilet after a feed and she'd take care of business. However, we can't keep things THAT loose for long, because she would be losing too much fluid that way. So hopefully we find the right dose for her!

In other GI news, we increased KayTar's feeds last week and it started out well, but she had some post-feed tummy pain a few times and then she vomited up her entire feed Friday night. She said she was too full. It was the first time she has vomited in a good long while (for her anyway) and the increase in formula volume was the only real change. Saturday morning, we went back down to 6 ounces at a time and she's been okay, mostly. She also threw up last night (a few minutes prior to puking, she was crying because she wanted to sleep in my bed for a third night in a row). I couldn't figure out where her puke bowl was in the dark (it was hiding under the bed) so I had to run her to the bathroom and we didn't quite make it all the way. There was a bit of a trail left behind us. Yuck. She seems okay, though...just part of being KayTar, I guess!

I'm a little disappointed that the transition back to 8 ounce feeds was not a success. While 6 ounces at a time is totally workable and much better than 4 ounce feeds, I just don't like that we've lost ground or that we're looking at a new normal for her. Although KayTar has a history of new issues cropping up on her, this is the first time I feel like we're likely seeing a decline in organ function (well, other than her progressive hearing loss). Her reflux and constipation have gotten worse and her volume tolerance has decreased. It is SLIGHT, so slight, but it is still a step in the wrong direction. Her GI doctor did write a prescription for Augmentin to be used as a prokinetic agent (200mg, 4 times daily) to try to get her back up to normal feeds, but I'm torn about starting that at this point. IF this is progression, then we are likely to see more at some point, and if we pull out the big guns now, there won't be many next steps to take LATER when we might be looking at a more significant decline. We can live with five 6 ounce feeds every day. It is a little more inconvenient, but not too much of a change overall. But if in a year or two years or three years, she starts to tolerate less and less volume, I don't want to be out of options. I'm getting ahead of myself, I recognize that, but these long term concerns are a factor in what decisions we make right now. I think at this point, we're going to keep her at 6 ounce feeds for a couple more weeks and maybe attempt another transition. I'm not sure if time will make any difference, but it is the course of action that seems least risky for her right now.

Wednesday, October 05, 2011

Tuesday, October 04, 2011

KayTar is doing much better! She is still on Suprax, but she was doing well enough to attempt the day on Thursday. She made it through the day, although her glucose was a bit lower than usual (probably from the extra stress from the pneumonia). Friday was a in-service day, so she had extra time to rest/heal over the weekend. Monday was a totally normal day (right down to the daily headache)!

This zebra art car parked in front of us.

Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.

"Take a picture of how strong I am!"

First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.

Gloves! She was ecstatic they gave her some!

The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.

When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)